‘Life changing or a failure’? Qualitative experiences of service users from the weight maintenance phase of the NHS Low Calorie Diet Programme pilot for type 2 diabetes

Background : The weight maintenance phase of the NHS Low Calorie Diet (LCD) programme focuses on embedding long-term dietary and physical activity changes. Understanding individual experiences of this phase is crucial to exploring long-term effectiveness and equity of the intervention approach. Methods : This was a coproduced qualitative study underpinned by a realist informed approach, using interviews and photovoice techniques. Service users (n=25) of the NHS LCD programme were recruited from three delivery models, across 21 sites in England. Data were analysed using a thematic approach. Results : The experiences reported were largely positive, with many participants reporting changes in their diet and physical activity. Some service users expressed a need for additional support and there appeared variation in their experiences of the service providers and the wider available support network. Fear of weight regain and its glycaemic consequences was expressed by many; various mitigations were employed, including participating in other weight loss services and continuing use of Total Diet Replacement products. Conclusions : The NHS LCD programme has been life-changing for some people. However, service user insights suggest that a stronger person-centred focus might further improve effectiveness and service user experience.


Introduction
This is the third and final paper in a series examining qualitative service user experiences of the NHS Low Calorie Diet (LCD) Programme pilot. 1,2This paper focuses on experiences reported at the end of the weight maintenance (WM) phase, coinciding with the end of the 52-week programme.An overview of the LCD programme (now known as the NHS Type 2 Diabetes Path to Remission Programme) has previously been reported. 3he focus of the WM phase of the LCD programme is to support service users to embed long-term dietary and physical activity changes.This phase promotes an individualised approach whereby service users are supported to maintain their weight loss or to undertake further controlled weight loss if appropriate.
Stated aims of the programme include success in driving weight change, glycaemic improvements and diabetes remission. 4These will be assessed through quantitative evaluation by NHS England and reported elsewhere.However, understanding service user-led measures of success is important for exploring engagement, motivation and other factors which may drive the measured quantitative outcomes. 5,6he Re:Mission study was underpinned by a realist informed approach, 7 to help provide research-informed theories to determine how and why outcomes may differ for different people.The ability to understand which aspects of the programme work and which do not work, for whom and why is also critical in ensuring ongoing service improvements and equity.A full summary of the methods used in the study is reported in a simultaneously published paper. 3

Methods
This paper details the methodological approach taken using the COREQ guidelines, 8 which are described in supplementary file 1 -online at www.bjd-abcd.com.
Participants were recruited to interview on either expressing an interest in the participant survey or responding to an invitation sent via their service provider.Maximum variation sampling was used to gain representation from across different socio-demographic and service delivery models and providers. 9his sampling took into account the variation in number of contracts different providers held.Full recruitment methods are reported here. 3Longitudinal interviews were conducted with a sample of 25 participants (83% of the original cohort recruited and interviewed at 12 weeks, and 92% of those interviewed at 18 weeks).Participant characteristics are summarised in Table 1 and supplementary file 2 -online at www.bjd-abcd.com.Those participants lost to follow-up from the 18-week interviews either withdrew from the study for personal reasons, did not complete the LCD programme, or did not respond to follow-up interview invitations.The experiences of service users who withdrew from the programme are reported elsewhere. 10Of the 25 participants, 12 shared audio recordings, films or images prior to the interview 3 (see supplementary file 3 -online at www.bjdabcd.com);many of those who did not share reported lack of time before the interview.Two researchers (KD, CH) conducted the interviews, with six interviews supported by members of the Re:Mission patient and public involvement team (supplementary file 2 -online at www.bjd-abcd.com).Interviews were conducted and recorded online (MS Teams) and lasted between 34 and 75 minutes.
Interviews were transcribed verbatim and analysed thematically by KK. 11 The 52-week interviews were coded deductively and inductively using the 12-and 18-week thematic analysis framework, with additional codes from the 52-week data added to the framework.A sample of transcripts were cross-checked by CH, followed by discussion between KK and CH, to inform the final thematic framework used to undertake final coding.Data were stored and organised using NVivo Software (QS International Play Ltd.

Results
Participant demographics were largely representative of the overall LCD pilot population sample, according to interim data presented to the advisory group in summer of 2023.Participant characteristics are presented in Table 1.
Five core themes were derived from the data: 1) personally meaningful outcomes; 2) support for behaviour change; 3) relationships with the coach and provider; 4) support networks, and 5) looking forward.

Personally meaningful outcomes (Table 2)
Participants reflected on their weight and glycaemia levels at 52 weeks, and highlighted a mix of experiences related to these outcomes.Many participants self-reported being in diabetes remission and no longer needing medication as they were discharged from the programme and had maintained weight loss throughout the programme, but some still sought further weight loss.Some participants reported regaining weight above their baseline and a return to elevated glycaemia.
In addition to the measures routinely collected by the service providers, participants shared positive experiences across personal measures of success.They included improvements in psychosocial wellbeing, quality of life and dayto-day physical functioning such as being able to put on their own shoes, playing with grandchildren, walking without breathing difficulties or sitting more comfortably in aeroplane seats.The positive experiences also included changes in physical appearance such as fitting into clothes not worn in years, and not being recognised.Weight loss also resulted in improvements to social relationships, as participants were able to be more active with their family and friends.Positive impacts of the programme on the health of family and friends were also discussed, such as family members adopting healthier eating habits and achieving weight loss.

Support for behaviour change (Table 3)
The sessions delivered during the weight maintenance phase The ethnic group classification as used by the Office for National Statistics in the 2021 Census § The Index of Multiple Deprivation (IMD) score is an absolute measure of deprivation that allows for Lower Super Output Areas (LSOAs) in England to be ranked and subsequently classified into five quintile bands.Quintile 1 is the 20% most deprived LSOAs in England, while quintile 5 is the 20% least deprived LSOAs focused on encouraging long-term changes in healthy eating and physical activity behaviours, with some providers providing pedometers and encouraging walking challenges that were reported at each session.Some participants talked positively about the ways in which they were more active, whether alone or with family and friends, and many felt this was associated with maintaining their weight loss.There was also increased awareness of the nutritional value of foods and the proportion of different types of foods that make up a balanced meal.Participants said they were making healthier choices because they had a better understanding of the impact of food and drink on their health.This knowledge helped them to change behaviours relating to cooking and shopping.
For some, there were challenges adopting healthy behaviours due to ongoing emotional eating, with a perception that, despite having improved their nutritional knowledge, the programme had not sufficiently addressed the 'mental side' of eating behaviour, resulting in a resumption of using food to help cope with emotionally challenging personal circumstances.
Relationships with the coach and provider (Table 4) The behaviours and approach of the coach, and of the provider, appeared to influence the participants' motivation and general impressions of the programme.Coaches were generally considered to be supportive, showing empathy, responding to concerns, and tailoring session delivery to the needs of the group or individual participant.However, some participants shared examples of practice which had impacted them negatively: for example, when the coach named individuals in group sessions who had met their goals, those who had not achieved their goals were left feeling shamed.If they encountered different coaches during their programme journey, participants sometimes noted inconsistency in delivery styles and reported an impact on the development of participantcoach relationships, with some sessions being very 'slide-heavy' and thus limiting time for personalised support.
Making contact with the coach outside the sessions was reported to be difficult by some participants; examples were described of making contact with the provider but not being called back.Experiences with call centre staff were often regarded as unsatisfactory, with queries not being addressed effectively and a lack of person-centredness.One example was repeated contact being instigated by the provider to obtain routine monitoring information (such as weight and glucose levels) following a bereavement.

Support networks (Table 5)
Outside the formal sessions, informal support networks with peers, family and friends and healthcare professionals were reported as important.For participants taking part in group sessions, peer support had developed through WhatsApp groups during earlier stages of the programme.This peer-led support via WhatsApp decreased during the weight maintenance phase.Participants discussed the social support that they wanted and received from family, friends and colleagues, which included receiving compliments about changes to their appearance, motivation for exercise, and reduced pressure to eat unhealthy foods.While the support and encouragement of healthcare professionals was reported by participants to be motivating, it was noted that not all had indepth knowledge of the programme or participants' progress.
Looking forward (Table 6) Participants' aspirations for the future varied: some aimed to achieve further weight loss, while others sought to attain or sustain their diabetes remission through maintaining lifestyle changes.Fear of regaining weight and hyperglycaemia was expressed, with the potential for improving health acting as a motivating factor for behaviour changes.Some participants reported exploring further options for managing their weight, with many planning to continue using Total Diet Replacement (TDR) products, having had the experience of four weeks of 'rescue' TDR offered in the event of weight regain (termed by some providers a 'reset').

Discussion
Service users were interviewed longitudinally at three time points along their NHS LCD programme journey.The interviews sought to explore the real-time experiences of service users to help understand how the programme works for different people, what barriers and enablers are along the way, and how future services could be improved.This paper shares the experiences of participants at the end of the WM phase (52 weeks), as they were about to complete or had recently completed the LCD programme.Improvements in psychosocial outcomes and physical functioning appeared as important as clinical outcomes to participants.Whilst clinical measures are an integral part of monitoring efficacy, patient-reported outcomes and goals are known to be key factors for motivation. 12,13he importance of increased levels of physical activity observed in participants at 18 weeks continued into the weight maintenance phase. 2 Here, participants positively associated physical activity with maintenance of weight loss and glycaemic improvements.The benefits to functional fitness, overall health and the wider impact on family members were facilitators to ongoing activity.
Several participants reported continued use of TDR products outside the four-week rescue package provided as part of the programme. 4This prolonged use was said to help regulate energy intake, support continued weight loss or provide a method to manage periods of weight regain.The intention to use TDR in this way was also reported in the participant survey and previous clinical trials. 14,15Whilst TDR product use is considered safe and effective in the short term, further research is needed to explore implications associated with longer-term use.The relationship with their coach was seen as important by participants and was affected by delivery approaches as well as continuity.The relationship between coach and service user can influence levels of trust and information shared. 16uboptimal communication between coaches, other staff within the service provider and healthcare professionals in general practice was highlighted by some participants; improving this may support better service user experience. 17he provision of personalised support was regarded as being of major importance.Some participants reported needing support after the end of the programme, and were considering

ORIGINAL RESEARCH
Qualitative learning from an evaluation of the NHS low calorie diet programme."And then people in the group, they put in their own little bits of information and we all kind of talk to each other on the chat on there."(P48) "I have friends on WhatsApp we make, the people that managed to see the pilot to the end we made a WhatsApp group at the very beginning.And so they would fill me in on the kind of things that I missed and I read them up in the book so I didn't feel that I was kind of getting behind with the information that was being given out."(P66) options such as commercial weight management programmes, bariatric surgery and weight loss drugs.While most participants noted positive experiences, not all found the programme to be successful for them, with some reporting weight regain; this was attributed by some to challenges transitioning from TDR to a healthy diet, managing emotional eating and adopting healthier behaviours.

Strengths and limitations
This paper presents unique participant experiences at the end of their NHS LCD programme journey.The longitudinal design of this study facilitated trust and openness between researchers and participants during the interviews, and produced a greater depth of understanding.Due to participant drop-out, the final sample did not include service users from the face-to-face, one-to-one delivery model, and as such this experience is not reflected within the data presented.This study provides experiences of service users interviewed up to the completion of the programme at 12 months but the longer-term outcomes of the LCD programme remain unknown.A follow-up study conducted a year after completion of the programme would provide clearer insight into the longer-term outcomes of the LCD programme.

Recommendations for policy, practice and research
1. Consideration should be given to routinely monitoring additional outcomes which may be meaningful for service users.
2. Providers should aim to support continuity between participants and coaches to support the development of coach-participant relationships.3. Support outside the sessions should be strengthened, with emphasis on the provision of person-centred care.4. Increased communication between provider and primary care is required to improve service users' experience throughout the programme.5. Providers should aim to address the individual needs of participants, including support or signposting to help with emotional eating.This may be facilitated by one-to-one delivery.6. Consideration should be given towards the provision of peer support.7. Commissioners, providers and healthcare professionals should consider providing clearer messaging relating to the ongoing use of TDR products.8. Further research is required on the support needs of service users following completion of the programme and the physiological and psychological impact of prolonged TDR use.

Conclusion
The NHS LCD programme has been life-changing for some participants.This study provides unique insights to help further understand the enablers and barriers to effective

Table 1 .
Participant characteristics at 52-week interviews

Table 2 .
Theme one -Personally meaningful outcomes: quotes "I believe I'm still in remission.I've been this morning for the blood test, so I'll be getting the latest results, the final results on that next week.In terms of the readings I'm doing, they're, they're still lower than what I started at in terms of the weekly readings I'm doing and I'm, I obviously haven't had any medication now for a year."(P40) "So essentially it, I suppose how do you measure the success of the project?I don't know.But for me it's been a failure.If my goal was to lose weight, then that succeeded, but I put it all back on now and then some, so I'm almost as heavy as I've ever been."(P16) "I said when I spoke to you last time, what I'd really like to do is lose more weight and I'"Getting in, getting in a size 12.Looking in the mirror and getting, that is the biggest bonus, you know, just getting into normal sized clothing.And I think the one, the thing that sticks in my mind more than anything else was the, one of the nurses at the local practice, which I know her really well, and I had to make myself known to her in Asda about six months ago.She didn't recognise me.Oh, it's, you know and I'm thinking, really, you know.And I'm like, yeah.So I get that every time I look in the mirror that, if that isn't a boost to say, 'cause I hated the way I looked, you know."(P50) "I mean me husband were brilliant.He managed to lose a stone just by not having a drink, you know, not drinking in the week or not eating crap.Me not buying crap in for anybody to eat.So he lost a stone at that time as well.You know, the kids were really good."(P58) "It's life changing, I mean I've said this before, it's absolutely it's life giving and it's like life changing at the same time.And it's empowering."(P17)

Table 3 .
Theme two -Support for behaviour change: quotes We're going to go out for a walk and go and get some fresh air, going through things and it's actually yeah 'cause I've got a teenage son who yeah is attached to every device possible, so getting him out as well.To look at the countryside and just, just do something and see something cool is yeah what we've been doing quite a bit more of."(P21) "The one thing that they did get me into was starting to swim a lot, yeah.And using the local gyms, which I'd never done before.
"I still batch cook, yeah, so it's a good way for me to portion control as well because if I do a big pot I'll eat a big pot.And that's how I deal with it."(P17)"I don't worry about each individual day.I try to plan my shopping for the week and then I find that works for me.And also I've discovered that I really shouldn't keep lots of extra food in the house 'cause that's just one temptation too much.So I don't.I've gone back to what I did was when I was younger, which is buying stuff in basically as I need it or on a weekly basis."(P51)"I think the programme has failed to address the mental side of why I'm a comfort eater.Why when I'm depressed, when I'm miserable, when I'm sad, when I'm anxious, I run to food.It's not addressed that.Yes, it's educated me on if I stop eating rubbish and do exercise, I'm gonna lose weight.Of course it's educated me, it's educated me about proteins and carbohydrates and all that good stuff.It hasn't helped me mentally."(P18)"Therehave been some ups and downs.Not because of the initial phase.I mean, I got used to the, you know, restricted calories.I got used to having the shakes and the soups.I got used to eating, to, you know, to being on a liquid diet because my body adjusted, my mind adjusted.But the maintenance phase, there's been some ups and downs.As I said, I've had some personal trauma that I've gone through, which has resulted in binge eating if you like, to deal with the emotional fallout."(P43) "I think because I relapsed onto the sugar very quickly and got readdicted to it very quickly, 'cause I think I said before didn't I that I was a sugar addict."(P56)

Table 4 .
Theme three -Relationships with the coach and provider: quotes 't understand one of them.One of them just read off the slides and literally that was it.Nobody spoke 'cause it wasn't the same.You could tell she just wanted to get the slides out, slides done and say, yeah, we're finished, off you go" (P36) "The lady we ended up with, it was just, it was just a monologue.There was no interaction.She was slagging it, she was slagging the data, she was slagging the detail on the slides off.It was just, it was shocking really.It was so unprofessional.You know, she brings, brings the slide up that says how many calories should you aim for?Oh, she says, that's a load of rubbish isn't it?"(P40) "Yeah, I mean they [coaches] was very good.I can honestly say they was very good on the course.(P9) "When eventually we had the last meeting…, it was obvious that everybody who'd stuck the programme, had achieved gold or silver or something, great success was being made.And then eventually, which is really not a good practice, is every name was gone through as to who had got gold or not, and mine wasn't even mentioned, you know.And I just thought I felt that, I thought well I'm the only one not mentioned.I kind of knew I'd put on weight anyway, so I wasn't gonna get any kind of mention or anything, but it kind of, the reason for raising it is it underlines that sense of there's something abnormal about me that others don't understand."(P16) "If they kept the same person all the way through, it would be good.It, you just question why you get so many and then the next week you get somebody out and then the one comes back and then you get another one."(P36) "I just said it was along the lines it was, it wasn't, it was along the lines of I'm struggling at the moment, I'm off work with mental health, and I'd appreciate a call back to discuss.I was struggling because I wasn't eating, so it was along them lines.I wasn't, it was can I have some support?Can someone ring me?And they didn't.They rang me three weeks later and I'd sent two emails and I'd tried to ring several times but just couldn't get through.So that was disappointing."(P7) "Well I phoned a couple of times.Especially after my, my gran died, with me suffering as I was.And they told me somebody would call me back both times.Nobody did.Then a few weeks later somebody started harassing me every day.Which didn't help matters with the way I was.But obviously when you rang up, you don't get the person you really want to talk to.You get the helpdesk or the call centre.So you don't speak to the one you really want to speak to.So you're just telling somebody that probably doesn't know what you're really on about, and that you may need to talk to somebody else, and then you have to wait for the call.But when they're phoning you more than once a day for seven days, I'm sorry but that's a bit out of question" (P36)

Table 5 .
Theme four -Support networks: quotes

Table 6 .
Theme four -Looking forward: quotes it's maintaining that, just maintaining the non-diabetes status.Cause I didn't, I don't know, I didn't think it would happen so quickly I suppose.I didn't, I didn't really think about it.I knew that at the end of the year I'd be fine, but I didn't think it would happen so quickly.So yeah, that that's good.That's my target."(P19)"Ihopetolose a lot more weight and stay healthy.And do a lot of walking."(P35)Wellthere'sanobvious concern that you'll relapse, but the longer it goes on and the more I stay within that buffer zone, the more convinced I am that I won't completely relapse and go back to 144k or whatever it was.I, the trick for me is, is the increasing that weight loss and getting down even further so I start to get more to what you might consider to be a healthy weight even at 61." (P51) "I feel a bit frightened.Because I'm shocked at how quick just from, you know, I haven't been eating awful things, I've just not been eating properly.So I think that's clearly my problem and not my weight because my weight I'm not, I'm not heavy, I'm eight stone 12.You know, it's not my weight with me, I think it's, it's obviously something else isn't it.It's my food, my diet, the way I eat that's caused me to have diabetes.SoI think slipping into old habits, it scared me how quickly it's gone back on.So I've got no choice because I'm not gonna feel like this, and you know, I don't want a stroke, I don't want to have bad health issues in a couple of years time."(P7)"Itmightbethat Weight Watchers is where I go to maintain whatever weight loss I get.But there's an, there's an online community with it.The language that they use, it's not good or bad.It's very simple."(P56)"I've abandoned the diet completely 'cause I was getting to a point where I was controlling too much the food I was eating and I was eating too little.So I've joined another programme that was towards the end of the [provider].I've been doing it for about 2-3 months and they have got the opposite approach.So don't check what you eat, don't weigh anything, don't count calories.You have to, you know what's good for you and what's not good for you.It has to become ingrained in you, it has to become your life.So it's a lifestyle change in that sense.So the weight loss has, which was kickstarted by the liquid diets, been great."(P57) "I've now asked my GP about bariatric treatment and the fat jab, because I put on the weight that I did lose back on.Because obviously with the setbacks I comfort ate again.Even though I did the reset weeks."(P36) Improvements in psychosocial outcomes and physical functioning are important.Moving the focus from clinical outcomes to patient reported outcomes may support individual motivation on these types of programmes.
programme delivery and outcomes, and it provides several recommendations for ongoing service improvements and research requirements.▲